I began feeling unwell about 2 years ago, something was just off, and summer of last year it turned worse. I began trying to get help a year ago and I have had so many contacts with health care since. I've felt like I'm going crazy, because all standard tests come back normal while I feel so exhausted I can't care for myself.

My eyes hurt so much the past 10 months and I've been trying to get someone to help me, I finally got to see an ophthalmologis a month ago. She commented that I looked tired and my eyes look fine, I probably just need a rest. I asked her to please measure my tear production cause something aint right and I had 0 mm bilateral Schirmer's test, she was so surprised. Then more tests and I got a KCS + MGD diagnosis and I cried from relief when the optician who did the test said it was NOT strange that my eyes hurt, that she didn't understand how I could even work. I've seriously been telling myself my eyes must be hurting so much because I'm overly sensitive.

I feel so lonely and desperate and kind of pathetic when I am trying to get help and no one seems to grasp the severity of how much my life has changed. I don't understand what is happening, and for me who's an analytical problem solver my instinct is to try and find out what's wrong so I can do something about it, but I'm powerless. The PCP I had for the first 6 months of this did not help my sanity, he was 100% convinced that I just have somatic symptom disorder so everything I said just confirmed his hypothesis. He said famotidine curing my stomach issues that he diagnosed as IBS was cause of its' anxiolytic effects, that I am one of those patients who get sicker the more health care contacts I have?

I'm just struggling. I am failing as a partner, as a colleague and as a person, I turned 40 and have had to cancel my birthday trip twice because I was too unwell to go, I can barely leave the house because I'm so exhausted, but I can't get sick-leave because I shouldn't be feeling this tired when "all my tests are normal". I haven't cooked dinner in months, my partner carries such a large burden, I'm scared this will ruin our relationship in the end.

It's like I'm living in some kafkaesque nightmare I can't get out of. My brain starts to wander to places where I wonder if I'm just imaging everything, maybe I'm just making myself ill somehow, without me knowing it? That maybe it's normal not being able to finish a meal, vomiting/regurgitating, maybe it's like this for everyone, maybe I'm too demanding when I want to know why and just a whiny woman when I say I can't live like this?

I've tried to seek less help, considering that maybe I have somatic symptom disorder, but I just feel more and more exhausted and unwell no matter what I do.

I sometimes feel disconnected from reality somehow, I'm not sure if it's from the stress of it all, it's like my body is my enemy and I can't get away any other way. How do you stay sane in this kind of situation?

I was putting away stuff I'd just bought, and when I shoved another big box of Dimora foam dressings into the bathroom cabinet I just froze. My shelf used to have lotion and perfume on it. Not it's sterile gauze, a bottle of saline for cleaning, and Double base and E45 emollients.

My mornings aren't about getting ready for the day anymore. Before I can put pants on I spend thirty minutes peeling tape off, checking for drainage, cleaning the wound, and putting a new dressing on.

Watching people walk around outside in shorts and flip flops, my brain can't even process it. Not having to wrap my leg in plastic wrap before a shower, not worrying about drainage soaking through my sock at work, not feeling the tape residue left on my skin, all of it feels like someone else's life. Like a past life.

It's not even sadness. It's this heavy numbness, like the wound has become part of me. Wondering if anyone else is the same.

WHY DOES IT HAVE TO BE LIKE THIS!? 😭

One moment I'm fine and just going about my day and the next I'm literally trying to fight for my life to keep myself up!

I really don't know what I'm looking for.... maybe just to vent. I know i need to get divorced, but that seems like an insurmountable task when even showering is difficult most days. My husband and I have been together nearly 30 years (married only 9, long story). For most of our relationship I was the caregiver, even though he was never ill. I was always taking care of everything, which was fine, I was happy to do it. He did work and was active around the house, we had a good relationship for the most part, but I essentially took on the "lead" role when he lefty his parents house- I was always the "fixer." In 2019 when I first got sick it happened very quickly. I went to work and came home looking unwell, the next morning I was in the hospital having a heart attack and our lives have NEVER EVER been the same. It's been one traumatic illness after the next- a stroke, heart failure, weekly apheresis treatments, pulmonary embolism, blood transfusions, MANY hospital stays.... We share a young daughter. She was 9 when I became ill in 2019 and my husband, rather than bucking up and getting things done, FROZE. For 2 years he became incapacitated. My family had to come help. Long story short, over the years my daughter has learned to fend for herself and my husband has let himself go soi much so that yesterday he told me , " is been 86 days since I've left the house." I'm afraid that his fear of losing me turned him into a hermit, which in turn has evolved into full blown agoraphobia.

I have tried to get him mental health help, which he refuses. He did suffer a brain injury at a young age (22) which causes him depression and anxiety, but this is unlike anything we've ever experienced before. He will argue with me that my stroke and illness have stolen me from him- which is very sad for me. I cannot fix that I'm ill. He has essentially isolated himself to one room in our house at this point and I know that divorce is likely my only option, but how when I'm just barely able to manage my own illness do I take that in as well? He's not physically abusive, but it's definitely not helpful to have someone constantly reminding me that I used to be "whole" and I used to be "better"..... I don't know why I posted here, I suppose just to vent. I know I've let this go far too long and I should have pulled the divorce trigger LONG AGO, but i worry he will end up homeless or worse and he's still my daughter's father.

I'm sorry if this is the wrong place for posting this. I'm sure other chronic illness suffers may deal with this.

My family member sent me a text. Basically, they want me to tell my doctors to decrease all of my medications and there worried that I won't know what it's like to be a normal adult. This basically came out of nowhere. They said that I've experienced more symptoms, but that's not even true. My symptoms have actually decreased. So why would I tell them that I experience more symptoms with more medication? Shaking was also brought up. That was a side effect that I was experiencing with one of my medications but that stopped once the dose decreased.

Look, I get that medication can have side effects. No one wants to deal with that. However, I tell my doctors if I'm experiencing any side effects and they respond accordingly. Sometimes the benefit outweighs the side effects. In my opinion, I think that they just don't want me to be on medication out of fear. However, I'm not going to tell my doctors to decrease all of my medications. Especially since she's going off things that aren't even true and no one has recommended that to me.

i have chronic vestibular and regular migraines. my migraines can often consistent of dizziness, visual distortions (double vision, spinning vision, items look like theyre wobbling/bouncing, etc) and severe vertigo. at its worse, i was unable to walk indepdently and had to be in a wheelchair in the hospital and couldnt use the restroom by myself due to being a fall risk.

i spent 6 weeks unable to drive or work due to the daily severe vertigo. then i went without it for a few weeks after that, then a year without vertigo. in june i began having episodes of it again. i was able to get it managed, but as of the last few weeks the vertigo has come back.

as of now, i always have some form of a migraine symptom. visual auras, oscillopsia, neck pain, weird disassociation feeling, and sometimes the intense vertigo again. luckily they have not gotten as severe as my attacks in feb 2025 but they are still happening often.

I have extremely severe psoriasis and eczema. Sometimes it interferes with my life obviously. I will get debilitating itch attacks, or just really severe pain from it. At its worst it has kept me from walking. I've gotten better over the past few months, but every now and then shit happens.

I had an incident at work today where I got sweaty, and it was a death sentence for my skin. The burning and itching was insane, and I ended up immobilized with pain for about 20 minutes on the floor of the big stall in the bathroom. The rest of the evening I was in a lot of discomfort, and was off my game.

I told a friend of mine what was happening, because I didn't know what else to do, and she told me that it was dumb and irresponsible of me to not tell my managers what was going on.

While I luckily didn't get in trouble for today, my co-worker was pissed off and things like this could happen again.

The issue is I am so extremely nervous and overwhelmed with telling them about this. I want advice on how to go about it, or anything to help me feel better about it. Because I'm scared they're not gonna care, and wonder why I'm telling them in the first place. I don't want to seem like I'm trying to seek attention, or get out of work, nor do I want to seem like a bad worker, or that I want special attention. Not only that, it's embarrassing.

I don't even know what to say, or how to not make it awkward when it's out of the blue like this, y'know? I'm 18 and I have a lot of nerves talking to my managers and stuff, I'm still adapting to being an adult and handling my medically complex self lol. Any advice would be great. Thanks !!

How do you cope with chronic illness? I do have better and worse periods but when I am worse I feel terrible because letting people around me down. I feel guilty that I cannot provide them what they've signed up for. I was healthy and very active until 2 years ago when I started to have a lot of GI issues and no one knows what is wrong with me...

During those periods I am not able to go out (I also have anxiety, linked to GI issues and nausea) and enjoy simple things such as restaurants, concerts, going out with friends. Going for vacation is a nightmare and even though I try to push through I suffer terribly...and do not enjoy anything. Sometime I just want to push through yet another day.

Tenía 19. Era muy problemático, y seguramente no me daba cuenta, pero la pasaba muy bien. Consumía marihuana y estaba apunto de salir de la preparatoria. Me encantaba ser existencial, la filosofía siempre ha sido para mí una forma de ver la vida con cierto encanto, elegancia y sensatez.
Mi padre habló conmigo fuertemente y tuve que alinearme, dejé las drogas y me metí de lleno en el camino del desarrollo personal, no sabiendo que estaba por iniciar una etapa increíble de mi vida.

Comencé con pequeños cambios, por ese momento no había muchas personas que hablaran del desarrollo en redes. Tendía mi cama después de despertarme, me comencé a bañar con agua fría por las mañanas y a vestirme de forma mas “decente”. El ejercicio trajo consigo buen aspecto y mayor energía, energía que podía utilizar para limpiar la casa, ayudar a mis padres y estudiar para mi examen de ingreso a la universidad. Aprobé y con cierta alegría y miedo, entré a la universidad.
El miedo provenía de un temor a ser insuficiente para concluir una carrera debido a mis malas actitudes del pasado, pero curiosamente ese mismo miedo, combinado con toda la transformación que se estaba produciendo en mi vida, me impulsaba para mejorar y probar que podía hacer las cosas.
Resolvía mis trabajos, aprobaba mis exámenes, y comencé a ser un referente en mi salón de compromiso. Puedo decir que si bien en ocasiones tenía pereza para hacer las cosas, tuve la voluntad necesaria para hacerlas a pesar de esa pereza, y hice de ello una habilidad que formaría mi carácter.
Lei bastante, y era consciente de que ahora no solo estaba desarrollando habilidades profesionales, si no que era un trabajo más a fondo, más íntegro, mas coherente y por lo tanto, espiritual. Fue una época dorada, que duró lo bastante para confiar en que algún día volveré a ser ese héroe de mi propia historia.

Así paso cierto tiempo, algunos años. Confianza era algo de lo que disponía. Pero empecé a sentirme algo cansado, suponía que tenía que descansar mejor. Algo pasó, no se bien que fue, pero empezaron los dolores de espalda. La información que absorbía con facilidad ahora parecía difusa, y ayudar en casa me empezaba a parecer pesado.
Estando en clase sentía nerviosismo, no podía parar de moverme, y ya no prestaba mucha atención. Me volví errático, rígido e irritable. Comenzaba a hacer cosas por impulso y al momento de ir a la cama, el insomnio hacía presencia para hacerme descansar 3-5 hrs por noche. Para mi último año en la carrera, se me recetaron antidepresivos (escitalopram y mirtazapina), se me diagnosticó depresión. Hasta pensé en poner en pausa la carrera. Logré terminarla.
Ahora, después de 2 años de haber concluido la carrera, de haber probado con varios medicamentos y de haber renunciado a mi puesto gerencial en el área de sanidad en un rancho de 75ha de arándano debido a la ansiedad, dolor, insomnio y fatiga crónica, me encuentro con el diagnóstico: fibromialgia. A veces no puedo creerlo, y sigo creyendo que puede ser algo más, pero esa búsqueda hace mucho que dejo de tener sentido.

Gracias por leer esto si llegaste hasta acá. ¿En qué se supone que trabaja alguien con esta condición?, ¿cómo puedo ganarme la vida dignamente? Son las preguntas que con frecuencia me hago, y es que si algo no he dejado de buscar en todo este largo camino es ¿Cómo puedo utilizar mi limitada energía para hacer algo que le dé propósito a mi vida?. Este no es un testimonio con final feliz, más bien se parece a una historia que no está completa, que necesita ser escrita nuevamente. La terapia te ha permitido ser funcional?, te ha ayudado a lidiar con el trabajo y las cuestiones diarias?. Después de haber trabajado tanto en mi, soy lo bastante vulnerable físicamente ahora, y creo necesitar algo de ayuda para volver a ser el héroe de mi historia.

Pd: agrego fotos mías desde que empecé todo este proceso, con cierta nostalgia y esperando volver a toparme con alguien así de fuerte.

Hello…I’ve been dealing with feel sick all the time but when I share my symptoms with my doctor they seem unsure of what might be going on. I’ve had these symptoms for many years but in the last few months they have been way more frequent:

- low grade fevers
- pain on left side of neck
- bruise easily
- fatigued
- headaches
- body aches

I’m thinking of seeing an internal medicine doctor soon since I’m not getting any answers with my PCP. I also had a very weird episode years ago where my neck started hurting on the left side and then I was numb down the left side of my body for weeks. I couldn’t empty my bladder for hours either. It was like my muscles in that area just stopped working.

Does this sound like a specific chronic condition or does it seem like it really could be anything?

I am thinking of creating a support group that allows people with chronic illnesses to get support from others. I like the idea of having more structured talking sessions and then also some casual hangouts like back in the Covid days with virtual tv watch parties/powerpoint nights/“happy” hours. Ideally once it gets going I can invite some speakers to join as well. I am in Southern California and would love to have in person sessions as well but my main goal is to really foster friendships with other people that GET it you know? What does this community think? Should it be more specific to one condition or leave it open to chronic conditions? Please reach out if you want to help me bring this idea to life!!

I grew up in a very strict Christian home so Halloween wasn't a thing for me. I've never really celebrated it or done anything fun for it now that I'm an adult. I guess I just don't care for it but I absolutely love seeing all the spooky stuff and bringing in the fall season too!!

I will indulge in the occasional spooky movie though. And I've been watching lots of vlogs of people going out doing spooky stuff and home decorating videos.

So what are y'all doing this year? It could be anything!

So I have a chronic illness that doesn’t really allow me to walk distances. I can’t stand for long period of time as well.
When we go to Walt Disney World, I always want a scooter because I just can’t walk the distance distances.

What do I do if I go on a cruise? I don’t want to rent a scooter. Is it easy to get around a cruise ship for somebody who really can’t walk much?

Those of you who have mobility issues, how do you handle it on a cruise?

We’d like to try a cruise, but I’m afraid I won’t be able to do anything and I’ll end up spending it all the time in my room.

Hi, so I have been chronically unwell for 7 years now. I seem to be reacting really poorly to food and don’t seem to have a pattern because I will react sometimes but not others. Sometimes It just seems like my body will react for the sake of it. It’s taking over my life though and I have now developed severely anxiety over eating. I will just get random funny turns. Like shaking, fast heart rate, struggling to catch my breath, feeling dizzy, often diarrhoea. I will sometimes get vomiting but not always. These spells completely floor me. Blood tests are coming back fine. I got some bloods for some allergies e.g milk and eggs which I seem to be reacting to more than not. Those blood tests came back fine. They gave me an autoimmune blood test which also came back fine.

The comments on my last post got deleted from a mod on here because it seems they allow racism and child abuse on this platform but don’t allow people to ask others for advice that could make a difference.

Mods I’m not seeking medical advice. I’m asking people for suggestions I can go to my doctor with!

Update: I am now going to my doctor to ask them to look into MCAS. Thank you kind people who commented.

I've been shower sitting to conserve energy and make it easier to bathe when my fatigue is really bad. Baths aren't ideal because they seem to take longer and trigger my dysautonomia.

Those with experience, how can I make sit-showering easier and/or more effective? Right now I'm just sitting on the floor of my bathtub and let the water rain down on me. It's working okay, but I'm wondering how I can make sure I'm keeping my undercarriage clean. Do you guys recommend a stool? An adjustable/hand held shower head? What's the technique here?

I have Hypermobility spectrum disorder, POTS, ME/CFS. As well as histamine intolerance/MCAS like symptoms but not severe MCAS/HI. My naturopath says he's never had a patient with full MCAS. But when I'm at work my symptoms are terrible. I feel so sick, flu like symptoms but without the respiratory, cough and phlegm. As soon as i get home and freshen up, shower and sit down my symptoms go from 8-9/10 to almost none. I work full time at a distribution center that ships packaged bread. I don't know why work makes my symptoms so bad. Terribly dry eyes, terrible feeling of malaise, dry throat, body aches, dizziness, nausea, anxiety, brain fog, GI upset. I also experience this when I'm outside sometimes just going about my business doing groceries, riding my bike around. I don't know exactly what the environmental factor is. I feel happy as a clam when i'm at home with the blinds closed and a dim lamp on relaxing. I've brought this up to my doctor and he admits that its a very niche health condition and he doesn't know much about it or any specialists that could help me. I live in Toronto, Canada. I'm going to continue working with my naturopath. It's been really hard for me to show up at work and in my personal life the way i'd like to. Just came here to vent. Maybe people can share their experiences and what's worked for them.

<3<3<3

I just started thinking about this after filling out the PHQ form. One question was if you feel bad about yourself, or feel like you're a failure or have let yourself or your family down.

This got me thinking about how my entire home is an adaptation to my energy level and symptoms.

For example, all my clothing needs to be comfortable enough so I can lie down if needed. They need to be relatively cheap, not need ironing, and if I get a stain, since I won't have energy to deal with it, I have to be OK with throwing it out.

I have things sitting out everywhere, either because I'm too tired to put them back, or because I might need them later, or because I didn't have energy to unpack them.

I constantly have to think about whether I'm going to cause myself more work later. This is huge for me.

For example, if I buy something new, will this really work or will I need to replace it later? I bought a microwave, but I haven't even plugged it in, because I'm worried about food exploding in there so I need to clean it, and I might not have energy to clean that day, and then the stains might become permanent inside the microwave.

Since I live by myself, every little noise or irregularity anywhere cost me a lot of stress. I am not sure that I could handle calling maintenance or repair. I just had some maintenance done, and it will take me weeks to recuperate.

I'm not able to travel anywhere, because last time I traveled somewhere, 10 years ago, I was exhausted for months. One journey will take about a year out of my life. If I leave the house, it generally takes a few months before I'm back to normal.

So I try not to replace things and as a result most things look old and worn. I might not be able to deal with cleaning or repair. I'm doing the best I can, but I'm starting to realize that from the outside, someone my age is supposed to do better, have come further, have nicer things.

Can anyone else relate? I feel so alone in this, and I don't feel others can relate. Even close family, friends, or a therapist, easily pathologize the fatigue as opposed to seeing it as a factor to plan around and adapt to.

I’m 29, and over the last ten years, chronic pain has taken two careers, hobbies, time with friends and family, and so much of my independence. I want to thank my primary care doctor without naming him publicly, but I need to explain what his help means to me.
For years, everything was “maybe this.”
Maybe this medication. Maybe this cream. Maybe this specialist. Maybe this injection.
I went through specialists, countless medications, physical therapy, chiropractic care, massage, injections in different areas of my back, heat, ice, and exercise when I could tolerate it. I also went to therapy because of what the pain was doing to me mentally.
Pregabalin helped for a while, especially with the worst flare-ups. But treatments became less effective, and some side effects became harder to tolerate than the relief was worth. Most days, my pain sat around a 4–6, with flares reaching a 10. A 2 or 3 was a rare good day.
I practically prayed for tests to show something we could treat. Instead, I kept hearing that the findings didn’t explain how much pain I was in. I was grateful nothing more serious showed up, but I still had to go home and live with it.
Driving, standing, bending, even intimacy became difficult. I still exercised when I could because sometimes it helped, but I needed long breaks and control over my pace. Other times, I left the gym practically crying and struggled through the drive home. Being able to exercise occasionally didn’t mean I could reliably work or live normally.
Eventually, buprenorphine tablets gave me relief that other treatments hadn’t. At first, even a small prescribed dose brought my pain down to around a 1–2 most of the time. Flares became rare. It felt like my body could finally relax.
But that relief came with side effects: severe sleepiness, sexual problems, nausea, and urinary difficulties. My primary doctor and an endocrinologist helped investigate hormone concerns that I felt my pain clinic dismissed. We eventually started testosterone treatment while continuing the medication that was finally helping my pain. The patches we tried also caused skin reactions, so those weren’t a workable alternative.
I was scared. Scared of long-term medication, scared of side effects, and especially scared of losing the first meaningful relief I’d found.
Then conflicting prescription instructions and messages relayed through a call center created a misunderstanding about how much medication I was taking. I was trying to clarify the directions before making a change, but I felt treated as though I was seeking extra medication.
The clinic ultimately discharged me. The reason they gave was that my fluctuating pain required a level of monitoring they weren’t comfortable providing—not medication abuse. They provided a refill and suggested transferring my care.
Even with that refill, I broke down. After finally finding relief, the possibility of losing access to it was terrifying.
I had already spoken to my primary doctor about temporarily taking over while I found another clinic. But when I sat in his office and cried, explaining how much the pain had taken and how afraid I was of going back, he offered something more reassuring.
Essentially, he told me: Don’t worry about more referrals right now. We’ll sit down on the first, establish a pain management agreement, and handle this together.
I cannot explain what hearing that meant.
The depression that came with uncontrolled pain had become so deep that I was afraid of what returning to it would do to me. He may very well have saved my life. This was about being able to function, keep some independence, and hold on to the parts of my life I still have.
My doctor didn’t promise a cure. He gave me a plan and reassurance that I wouldn’t be left to figure this out alone.
There aren’t enough words to thank him for that.
And for anyone who doesn’t live with chronic pain: you can see someone smile, exercise, or have a good afternoon without seeing what it costs them. You don’t see every canceled plan, every painful drive home, or every breakdown behind closed doors.
Having a doctor listen and help protect the progress you’ve made can mean more than you could ever know. To mine: thank you for helping me believe there is still a life ahead of me.

Hi everyone,

My father-in-law passed away yesterday. We have an unavoidable 6-hour road trip this coming Thursday to attend his funeral on Saturday, returning Sunday.

This is my first time doing long-distance travel since 2019, and I am very anxious about how my body and nervous system will hold up under the combination of physical travel and emotional grief.

My physical context:

• I have Mal de Débarquement Syndrome (MdDS) and vestibular migraines, complicated by recent autoimmune/thyroid flares.

• Essentially, my brain constantly feels like it is on a moving boat or rocking/swaying, and passive car motion is one of my biggest relapse triggers.

• My sensory threshold is extremely low right now. When I hit sensory or emotional overload, my brain dissociates and the physical rocking intensifies heavily.

What I'm struggling with:

• Surviving 6 hours in a car each way without triggering a major neurological flare.

• Navigating heavy grief, social expectations, and family dynamics at the service without completely crashing.

• Being away from home comforts and safe environments during an emotionally raw time.

For those who have navigated high-stress/emotion family events or funerals with an invisible illness:

1. Energy & boundary management: How do you step away or set boundaries when family expects you to be "present," but your body is redlining?

2. Subtle coping tools: What discreet sensory-dampening items (cooling, grounding, earplugs, tinted glasses) help you get through crowded, fluorescent-lit venues?

3. Emergency resets: What do you do when the emotional weight pushes your symptoms into an acute flare while away from home?

Thank you so much for any comfort or practical advice. It feels daunting trying to be supportive of my family while feeling physically terrified of the journey.

I’ve had to take so much time off of work due to flare ups and just the pure inability to work. And what happens yesterday?

My lower back started to hurt soooo bad, that they sent me home and told me to not come in today. I’m so discouraged and in so much pain. I’m hoping to not have to go to Urgent care, and wait until I can see a Dr. tomorrow. I can’t afford this, chat😭 and honestly, it’s starting to really effect my mental health anymore.

I’m probably overthinking this, but I’m a bit nervous for my appointment tomorrow. I’ve seen this PCP a couple of times just for regular ol’ stuff, nothing complex, and she is lovely. But tomorrow I’ll be going in to ask her about hormone testing and share some of my complex medical history. Essentially, I had a neck injury last year, which led to systemic loosening of my connective tissue. I was a healthy person before all this - maybe had some mild hypermobility but no pain or serious health issues. I believe the neck injury caused nervous system dysfunction, which inadvertently led to MCAS, which damaged and loosened my connective tissue. But I also want to cover my bases and check my hormones, since my ligaments get really loose around ovulation. And also see what other suggestions for tests she has. I will be seeing another doctor separately, to ask about the MCAS.

How do I word things so she doesn’t feel like I’m asking for specific things or trying to be too hands on? Should I just apologize in advance and tell her I have to be more involved in my care because I’ve had trouble finding answers, and just let her know I’m open to any suggestions she has? Or am I overthinking it?

I am afraid to spoil a good doctor relationship because she is really lovely and takes the time to listen and share resources.

helloo!

looking for good heated blanket recommendations that don’t break after a few months. tiny context bit is that i’m in bed most of the day, every day. online schooling, and only leaving the house for around 2-3 hours every few days. point is, my heated blanket gets a lot of use. don’t ask me what number heated blanket this is. i’m becoming deeply annoyed having to buy a new one every few months when it decides to just give up on me no matter what i do

thanks ^^

hey guys so i got sick a few years ago, diagnosed POTS which seems to be the main concern but also need evaluation to see if its secondary to an autoimmune condition or something else, idk. looking into hEDS & also probably me/cfs since i get PEM & flares last for eternity..

im just so tired. like i had so much hope cus i felt like i was kinda stable for a while. for like 2 months this summer i felt basically healed (not really, but in comparison). i was going out with friends occasionally and could walk around & doing stuff that i normally can’t do. i had a couple flares but they weren’t really that bad.. just the normal POTS stuff.

anyways it’s been about 2 months since then and it’s been nonstop terrible since. it seems like every week a new problem comes up. first it was gut issues, then vertigo, then i fainted, then shoulder issue, more gut issues, and now hip/pelvis problems.

i just haven’t had a flare this bad in a long time and idk what else to do. i’m losing so much hope. and it seems like it keeps getting worse instead of better even though im doing everything “right” (by the book)

it feels like most doctors either have no idea what’s wrong or how to help, or they just don’t feel like dealing with it. and then the very rare doctor that actually listens and helps has a waitlist that’s a century long.

also im usually never this negative so im sorry, i usually am so positive and good with dealing with this but i am so exhausted. by now its like every part of my body is in pain and having an issue and nothing will fix it. i just feel like im deteriorating and just have to let it happen. i miss my old body.